The Perfect Shitstorm

I have always been a guy who appreciates routine. I’m not as OCD as I used to be like the years when I parked my truck in the same space at work every day. Or when I took a picture down the same hallway every school day at the exact same time over a three year period. And let’s pretend that I didn’t buy a turkey sandwich on wheat bread every work day for at least five years from a place called the Sandwich Shop on Mission Street when I worked in San Francisco, okay? To say that I am intimately acquainted with the concept of routine would be an understatement of truly epic proportions.

Over the past year, however, my relationship with routine has changed somewhat considering the post-ALS diagnosis world in which I now reside. As I grow ever more dependent upon the assistance of others for my day to day needs, I have discovered the practicality in letting go of the more, say, idiosyncratic routines that I have long held onto.

In their stead, I have replaced them with more practical, treatment related routines. For example, I see Jen for acupuncture on Mondays, Christina for Qigong on Tuesdays and Fridays, Robin for PT on Wednesdays, and Sarah for nutrition and chiropractic on Saturdays. I even take my clinical trial drug twice a day, every day. It’s a routine that has worked for months on end and it afforded me the sense of an overall feeling of calm during these personally tumultuous times.

Everything was cool until the last two weeks when the metaphorical shit hit the fan.

My acupuncturist took a three week trip to Mexico. I haven’t had a chiro adjustment in two weeks because Sarah spent the holidays with her family in the midwest. I haven’t had PT in a fortnight either because Robin has been out of the office herself, and even if I went there to see someone else, the elevator was being repaired and that would’ve meant climbing the stairs (and I would still be there as I type). Christina suddenly moved back east to be with family. And I ran out of my clinical trial pills so not only have I noticed an up-tick in laughing and crying episodes but I am drooling more than a teething infant.

To make matters worse, over the past few weeks, I have noticed more difficulty in regards to walking, grabbing things with my fingers, and even getting a comfortable night’s sleep. In my head, I have assigned the blame of my diminishing capacities on these various interruptions in services and treatments. To top it off, I’ve been moodier and quicker to anger with family and friends and to be quite honest, I’ve been acting like a whiny little bitch. Oh woe is me.

Well, amidst my little pity party of the past two weeks, a wise and beautiful person (who also happens to be my wife) offered me up two simple words of advice: Buck up. At first I didn’t hear her; I believe that I mumbled something that could have been construed as ‘okay’ and went right about feeling sorry for myself.

It wasn’t until she took it upon herself to send out the necessary emails and make the requisite phone calls to get my spiraling out of control life back on track for me. Her unsolicited actions on my behalf spoke louder and more clearly about bucking up than any inspirational speech or motivational book ever could have.

I realize that there will be days ahead that are more difficult for me than others on this journey through life with ALS. I am so fortunate to have Fehmeen around to help me realize that it’s not the drugs and the treatments that are going to sustain me through the years and, hopefully, decades, but rather my spirit and conviction to fight through any adversity I encounter. Consider this realization my first blush at bucking up.

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